Wednesday, August 28, 2019

For Matty

I often have to travel between the two locations that I work for, which are about 10 minutes apart.  Most days I try to spend 4 hours at one location, and 4 hours at the other.  Since I am typically making the transition around lunchtime, I try to take my time and clear my mind.  There are plenty of restaurants, a home improvement store, and a consignment shop that I can visit.  Admittedly, one of my favorite sinful foods on earth is McDonald's french fries.  I'm pretty sure they are fried with flakes of sunshine and rainbows because they make me so happy.  So, once every week or so, I stop in for a hamburger and fries.  This is where I met "Matty".  

The first time I met Matty, I could tell that he had an MR diagnosis.  But the first thing that really struck me was how HAPPY this young man was.  The second thing that struck me was how the employees associated with Matty.  They were happy to see him, and made him feel right at home.  Matty marched right up to me and stuck out his hand.  He introduced himself and asked for my name, which I obliged.  We told me how he was looking forward to going to an amusement park that day.  I asked him what his favorite ride was, but he couldn't answer as it seemed he couldn't process the question very well.  All he knew was he was excited.

Over the course of the last few months, I've seen Matty a few times and said my hello.  He is excited that I talk with him but I'm pretty certain he doesn't remember me much from the previous encounter.  Something that doesn't change is his sweet disposition and his open heart.  Joy flows from this young man.

Today I walked in for my fry fix, and there sat Matty with a lady I perceived to possibly be his Mom.  I sat myself right next to their table so we could share lunch together.  I shook Matty's hand and I could see him struggle to remember me.  I re-introduced myself and the lady told him that we saw each other last at Burger King where I teased him for not being at McDonalds.  This seemed to spark his memory a little.  The lady explained that she is a caregiver from a local agency and she spends time during the day with Matty.  As curious as I am about him, I know better than to ask many questions.  We have to honor the legal and ethical rights Matty has to his privacy.  Matty was thrilled to have a friend sit and talk to him.  He was pointing out different colors, and complimented me on my fancy shirt (I was wearing a hawaiian shirt).  He repeated the Burger King story back to me time and time again, and then he would laugh.  I showed Matty a picture of Tyler and he was very inquisitive.  He showed me the crew hat that the employees gave him.

I finished eating and told Matty I needed to head back to work.  We looked at my empty tray and said "are you done?".  I nodded and he stood up and said "let me take this for you".  I protested that he didn't have to take my trash for me.  The caregiver touched my arm and said "let him do that for won't talk him out of it anyway".  She was right.  Just like with Tyler, once he set his mind to it, it was over.  Matty took pride in taking care of that for me.  Matty shook my hand twice more and we promised to see each other again.  "At Burger King!"  he said.  And then he laughed and said "take care" as I headed to the door.

Such a simple experience that made such a profound effect on me.  Here is a young man, full of joy and love for others.  He can't remember the names of colors and yet he wanted to show me kindness by taking care of my tray.  His heart only wants to connect with others in the same way.  For this, he is the prime example of human decency and kindness.  I hope that my interactions with him make him feel the same way.  Any I look forward to seeing Matty again real soon.

Be well and God bless.   Tom

Monday, August 26, 2019

Lessons From Andrew Luck

Some (or many) readers of this blog may not follow American Football at all.  While this post will tell the story of one particular player, its really about much larger points.  So even if you don't follow what happens on the gridiron, hang in there, and read on!

Andrew Luck played football for Stanford University.  Besides being an extremely talented player, he was a was revered as a leader.  Putting it into context, Stanford is already chock full of extremely smart people who will become future leaders, and Andrew was a leader for them.  Luck could have entered into pro football in 2010 but chose to stay with his teammates for one more season, and to earn his degree in architecture. 

In 2011, Luck became the #1 player picked in the draft by the Indianapolis Colts.  His career would be very successful as he would lead the team to multiple playoff appearances, and set many Colts, and NFL records along the way.  The last few years he would suffer some injuries which became difficult for him.  Suddenly, in 2019 he would decide to retire.

What's unfortunate is that the news of his retirement broke while he was on the sidelines watching his Colts play in a preseason game.  He was still nursing a calf strain and was not in uniform.  The fans began to get word via the internet that he had decided earlier that day to call it quits. 

Then...the unthinkable happened.  The fans, HIS fans, booed him as he left the field.  A man who had served them so faithfully and been such an example of leadership and class was BOOED off the field.  And for what?  Maybe he was the quarterback for their fantasy football team?  Perhaps they were worried about how it would effect their Super Bowl chances?

Andrew Luck is by all accounts an amazing leader.  He was known to recommend books to his teammates because he wanted them to enjoy his passion for reading.  He turned down being #1 in the 2010 draft so he could finish his commitment to his education and his teammates.  He was known to compliment the defensive payers who would pummel him on their good play.  He married his long time girlfriend and they are expecting their first child.  And THIS is who they selfishly booed off of the field.

Andrew simply stated that he didn't feel it deep in his heart anymore.  He couldn't justify the physical demands, the injuries, and the risk of permanent disability (especially head trauma) anymore.  He wants to explore other interests in his life.  He wants to be healthy enough to enjoy his wife and new child.  One writer quipped that this makes him the typical millennial, wanting the glory without putting in the work.  That writer had never played the game, never had the accomplishments, and likely never did anything more strenuous than carry a pack of paper to his desk.

There is a bright lesson to be taken from this story, and a dark one.  The dark lesson is that all those supporters immediately turned their back on his because they could only think about their own narrative.  As long as he was winning games and willing to donate his pound of flesh, they loved him.  But the minute he made a decision for himself, those pats on the back turned to stabs.  Now they sit around and cry foul about what horrors he has suddenly brought to them.  As though the Indianapolis Colts somehow holds the fate of the free world in its hands.

The bright lesson is that Andrew Luck had the courage to be the master of his own destiny.  He knew that many people depended on him on the field, and yet he chose to follow his heart and do what was right for him and his young family.  Make no mistake about it, he left fame and fortune behind and was willing to leave tens-of-millions-of-dollars on the table while doing it.  But as he probably did in all of those math classes he aced at Stanford, he weighed all sides of the equation.  He calculated each factor, and he knew what he needed.

My friends, our decisions will always be up for debate by others who do not live our lives.  Perhaps the majority of those around us have only the capacity to see what it means for their own agenda.  But when those boos stop (and they will stop), you need only to answer to your own heart.  And if you can look yourself in the mirror and know that you were led by your heart and that you did what you felt was right - you will not lose.  

Be well and God bless.    Tom

Friday, August 23, 2019

What If?

What if autistic children were sent onto this earth as angels, and those angels were sent to see how others would treat them?  What if those children were meant to someday inherit the earth and the heavens, and the rest of us would be judged by how we treated them?  What if we are protected as we protected them, respected as we respected them, and loved as we loved them? 

What if the poor were sent onto this earth as angels, and those angels were sent to see how others would treat them?  What if the poor were meant to someday inherit the earth and the heavens, and the rest of us would be judged by how we treated them?  What if we are treated with kindness and generosity as we treated them in kind?

What if pain and struggle was a gift from God, and that gift was sent to see how others would respond?  What if those in the greatest pain were meant to someday inherit the earth and the heavens, and the rest of us would be judged by how we responded?  What if we are comforted and cared for as we did for others on earth?

The angels are already here.  The gifts are already at our feet.  Those gifts have nothing to do with gold or money, but rather our capacity to love one another and care for those who need us the most.  For it will be those people who will inherit the riches forever.

Be well and God bless.  Tom

Thursday, August 22, 2019

Netflix Documentary

I will admit it....I am a sucker for a good documentary.  Netflix, I find, typically has some good ones.  What I look for are human interest stories.  Last night I watched a good one that explores the layers of mental illness through the eyes of someone suffering from severe bi-polar disorder.  It's called "God Knows I'm Here".

Without giving too much away, the true story examines the last weeks and months of it's subject Linda.  Linda has a similar story as many Americans with mental illness in that she begins to display erratic behavior and then has a love/hate relationship with medications and the friends and family trying desperately to help her.  In their own words these friends and family members describe the girl they knew, and the woman they saw toward the end that they barely recognized.  Her daughter described her as both "Mom" and "Linda".  Mom was rational and loving while controlled by medications, and "Linda" was paranoid and irrational when she was not.  

The documentary also briefly touches on the facility and doctors that tried to help her but eventually had little choice but to release her, without even the knowledge of the family.  This dynamic calls to question a person's right to have choices about their own care even when they are seemingly incapable of making good ones.  A doctor describes these individuals as "drowning in their own rights".  

What makes this documentary truly fascinating however, is that she creates a journal to describe her own decline and pending death.  In the fall of 2008 she finds herself living in an abandoned farmhouse, eating only apples from an apple tree and drinking water from the creek running on the property.  Its heartbreaking to hear her write that she is waiting to be rescued, as though she is trapped, when there is a house directly across the road.  She intentionally hides to not be seen and yet is awaiting rescue.  You begin to realize that the rescue she wants is from her own mind.  Amidst paranoia, a relationship with a purely fantasized husband, and her be comforted by the solitude, she cannot truly figure out her situation.

While there isn't much to correlate directly to Tyler, it is a fascinating study in mental health.  There are so many layers to mental health issues, and this certainly captures many of those.  By looking at the role the family played, the role she herself played, the institution, the current patient rights, etc. it provokes interesting discussion.

Give it a look and let me know what you think!

Be well and God bless.


Monday, August 19, 2019

Feedback from a Friend

Good Morning,

I realized this morning that a friend of mine, amazing artist, incredible human, and so-so author (I kid you my friend) Tom left feedback on the post "Deeper in the Woods" and I had yet to fully read it.  It was a little voice in my head that reminded me that I needed to read his thoughts.  Tom inspires me through his art and written word, but so much more by his gentle belief that only through care and love can we reach our true happy place.  

What I read humbled me right down to my socks.  The beautiful thing about our friendship is that we have often known what each other needed to hear without even knowing whats going on.  It's like a 6th sense.  His entire feedback is publish beneath the "Deeper in the Woods" entry, but I wanted to share a small piece of it:

What can I say, God, these are challenging times for you! I don't really know what to say except that your words here - so powerfully authentic, even gut-wrenching, (because they are so real, human and love inspired) are helpful and healing to all who read them. Not even so much because of what you are much as the fact that you want and need to share your deepest, most challenging, real life (in one way or another common to all of us) experiences at this time. The love reflected in your words is so obviously, and again - inspirationally rooted in your heart.

Those words reminded me of why I started this blog in the first place.  There are people, so many people, who are living as caregivers to children, siblings, parents, who are screaming my thoughts and words in their heads but cannot find the way to let them out.  Afraid to allow their most desperate, hopeful, or dark thoughts to see the light of day because of how others may react.  Or worse yet, upon hearing their own words, to have to come to grips with what they have said.

Writing from the most raw and unfiltered of places has its own risks.  Words typed through layers of emotion are not agreeable to everyone who may not understand those emotions.  Those who have never walked this journey may not grasp how a person might respond to things that happen around them.  But if I'm really, really lucky, someone will see a post and that will be the message that they needed to read at that moment of their life.  

On Sunday, Pastor John said something that resonated very strongly with me.  He said that when feeling grief it is necessary to allow yourself to really feel the emotions and express them as a means to process them and understand them.  If you have read my blog for any length of time you have heard those words come from me as well.  Our emotions and ability to express them is a true gift.  That gift isn't reserved for only thoughts of daisies and puppies (although I like puppies a lot) but for thoughts of desperation, frustration, and pain. These thoughts are also gifts that teach us things about ourselves and the world around us. 

I want to thank Tom for reminding me that life around us is hard, and sometimes downright impossible, but being true to one's authentic self is where we find the light to continue on.

Be well and God bless.   Tom

Sunday, August 18, 2019

A Favorite Tyler Memory

Just the other day Samantha looked at Tyler's graduation picture and asked me about it.  It brought back a wonderful memory that I hadn't shared for a while.  It's a story worth repeating....

When Tyler turned 21 he legally fulfilled his obligation to school and was able to graduate.  We were approached about how we would like him to receive his diploma.  Because he lived in Northeastern school district, and we paid the school taxes to them, he would receive their diploma, even though he didn't attend school there.  In reality, he attended his later school years at West York Middle School because that is where a suitable multi-disabilities class was housed.  To muddy the story a bit, he was actually under the guidance of a district called Lincoln Intermediate which housed classrooms within other districts.  So to recap...he was a student of Lincoln Intermediate, living in Northeastern, attending school in West York.  Need a scorecard yet?

He could graduate with the senior class at Northeastern....but he didn't know anyone there and they didn't know them.  He could graduate with a group from Licoln Intermediate, but again he didn't know them.  He could even graduate with the senior class of West York but again, same issue.  And I realized that the middle school was his home.  He was loved there.  The kids knew him there.  The faculty knew him there.  He was respected and taken care of there.  So I requested that he graduate THERE.  The school decided that at the end of the year, during an awards assembly, he would walk the stage and receive his diploma.  I requested permission to give a speech on his behalf, which they gladly obliged.

On graduation day his teacher stepped to the podium and began to speak.  She had loved him and taken care of him for 13 years and all of that seemed to come to the surface.  She wanted to make a speech, but instead she cried.  Those emotions spoke clearer and louder than any words would have done justice.  Dedication, love, encouragement, challenges, and triumph all flowed from her.  Miss Sue was and always will be his school Mom.

It was my turn.  I had written a speech and practiced it.  When I began to read the speech it didn't take long before my thoughts left it.  I was just going to say it from the heart.  I thanked everyone for the love and respect they surrounded him with.  It was every person in that room who lifted him up and carried him onto that stage.  They all walked with him to receive that honor in one way or another.  They played basketball with him, high-fived him in the halls, cheered him, and protected him.  I was as proud of them as I was of him.

Tyler then walked the stage to receive his diploma.  What happened next was pure magic that I will take with me to eternity.  Every person in the auditorium gave him a standing ovation.  They cheered him and clapped for him.  His perseverance moved them to tears and cheers.  For a moment time seemed to stand still as the love rained down on him.  It still gives me chills to close my eyes and remember that day.

This is a memory I visit sometimes when I want to remember the tremendous love that has so often surrounded him.  And it's a story that I can share with Sam to let her know the world can be a compassionate place if you look in the right places.

Be well and God bless.  Tom

Another Day the Blog Nearly Died

This afternoon I received a call from a very wonderfully lady who was asked by the church to call me and inform me that the blog has once again been suspended.  The church is currently deciding whether or not to permanently disassociate itself from the blog.  They will be meeting Tuesday night and will make this a point of discussion.  The theme is some of my blog posts cross the line of being "too political".

To be fair, there was a sentence in my post yesterday that did not correctly represent a point I was making,  My point was how we often see church leaders stump for a candidate they believe align with the values of their church, and yet opposing views don't belong because they are too political.  It's hypocritical.  I was not referring to my own experience at OUR church, but I did not draw that distinction.  I enjoy the current environment and the message being delivered and have no intention of leading anyone to believe otherwise.  I've actually edited that post to reflect this distinction.

However, to deny that politics is not a part of special needs parenting would be to deny the existence of air.  Politicians control the funding by which Tyler and all others like him rely on to live.  Laws are made or not made which protect special needs individuals.  And politicians are the first line of authority that people watch to find out where we stand in the world.  So to Tom you can't post anything political would be to deny that politics has any stake in the life that Tyler and I live.

This blog belongs to Tyler and his story.  And I have maintained for years that sometimes that story will inspire, sometimes it will provoke thought, and sometimes it will challenge our thinking.  But it will always be honest and true to who we are.  It will deal with points of view, all points of view, and without apology.

Sadly, a group of people will decide whether two posts out of the hundreds written, is too politically sensitive for them to keep it linked to the website.  Make no mistake, this is their choice to make.  I suppose it will left to a vote to well meaning folks who do not understand the actual point of the blog itself.  It's an expression of how I perceive the world around Tyler.  The WHOLE WORLD.  Not the world except for this subject or that subject.  That how it has always been and that's how it will stay.

I'm going to focus on the 60,000 people who have read the blog across the world.  The people who I've talked to in airports, neighborhoods, and by email who have said that because of the honesty and unapologetic things posted in the blog that it has helped them to cope with their own situation.  I will continue to write for them. I will continue to write for me as my way of making sense of what goes on around us.

As for whatever discussions that happen around the blog, I don't want to be involved.  I'm not going to justify a single word, nor should I be asked to.  For years I've written from my heart and that's how it will stay.

Be Well and God Bless.   Tom

Saturday, August 17, 2019

The Day the Blog (almost) Died

Good Evening.

About a year ago, this blog almost died.  I wrote an entry about the power of words. I pointed out that our leaders, leaders of all types, are responsible for setting an example for those who followed.  Regardless of political alliances we all have a moral responsibility to be a moral compass for those who are appointing us to do so.  I used Scott Wagner as an example.  While running for Governor of Pennsylvania he threatened to stomp his opponent in the face with golf cleats.  This is a fact.  I openly wondered how we had come so far removed from the respect that should be shown by a public servant.  I felt this to be important because the way we treat others is SO important to the special needs community.  When empathy suffers, the special needs community suffers.  When bullies win, the special needs community loses.  Because I used a conservative candidate as an example, the blog, sponsored by the church, was suspended.  I had to edit the entry or else face loss of sponsorship by the church.  I was not permitted to be "political".
I find it interesting that we often see national church leaders that dont mind being political when it endorses conservative candidates, but will threaten its sponsorship of the blog when it threatens conservative values.
The problem that we face as special needs parents is that empathy is becoming more scarce by the day.  Benefits are cut while needs increase.  Our "leaders" are justifying racism and elitism while their followers are happy to get theirs while thumbing their noses at those less fortunate.
The painful truth is that when our society is failing, the special needs community suffers first and suffers worse.  When we cut taxes for billionaires and cut funding for special needs children at the same time, we have lost our way.
We are a society that nearly cut funding for special Olympics and yet doesn't blink when a RB demands a 40 million dollar contract to play football.  We celebrate an individual who publically makes fun of a handicapped journalist and ridicules an overweight supporter.  We fly racist rebel flags without concern for the pain it causes others.  We watch our babies get gunned down and argue over weapon rights.  We turn away the poor.  We justify selfishness and hate.  These are facts.
Because our values are a direct reflection of how we treat our special needs community, I will never again be compelled to sensor myself.
We have to do better.  We have to demand better.  Forget political affiliation and start thinking of human affiliation.  We must ask ourselves what will help our fellow man FIRST.  Love has to come before all else.  Compassion.  Empathy.  Giving,  Community.  Without those things we will surely die.
Join me in demanding better of ourselves and each other.

Be well and God bless.  Tom

Wednesday, August 7, 2019

Deeper in the Weeds

Sometimes I consider doing a post and I wonder if I should.  After all, it seems that lately Tyler has gotten deeper in the weeds with his state of mind and behavior.  That brings out the despair and frustration in me, and then my posts wind up being gloomy and dark.  That isn't the way I want the blog to go.  I want it to be inspiring and helpful.

Then I remember....this IS who we are as caregivers.  We spend more then a fair share of our time wading through the weeds.  And sometimes the more we crawl, the deeper we seem to get.  Thats where we find ourselves at the moment.  Deep weeds.  In the deep weeds its hard to get out of bed, its hard to push through your day trying to look normal and interact as a normal person.  There are times I see an open door and I wonder if anyone would notice if I sprinted to the street and made a break for it.  You become preoccupied with searching and searching and searching every corner of your brain hoping to find an idea or an answer that you hadn't thought of before.  And all you find is the weeds.

I'm in the weeds because Tyler is in the weeds.  In fact, I've never seen Tyler this far into the weeds before.  It started about 6 months ago when his behavior normally shows its typical spring/fall improvement.  Instead of going into the manic months of loud excited speech and laughing at everything he sees and hears, he slipped backward.  To my knowledge nothing had changed.  He wasn't going through any environmental, medical, or other changes that I can pinpoint.  We immediately had CT scans done but they came back normal.  We also had him tested for a UTI to no avail.  By all accounts he is physically healthy, but psychiatric-ally falling apart.  Since Tyler is non-verbal a lot of this is guess-work.  We THINK he could possibly be hallucinating or at least in a confused state.   His balance has gotten bad as well.  Could that be signs of a small stroke?  His interaction with even his closest people has dropped to next to nothing.  He takes no joy in seeing me or the rest of his family.  It almost seems like a really deep depression.  He falls asleep often even while sitting for an activity.  He doesn't watch his true passion - baseball - anymore.  He stands almost all night at home and faces toward the back of the room.  

Has he had a mental breakdown?  Is he so saturated with 25 years of prescription drugs that he has experienced a chemical breakdown?  A stroke?  Scarring from years of seizure activity?  I just don't know.  And not knowing means I can't help fix him.  We tried a minor medicinal change and that seems to have increased the aggression we are seeing.  Add to all of this that we lost our Neurologist of 20+ years (he is a Pediatric Neurologist and was forced by his group to give him up finally at age 27) and now we have to start over with a new one.  I understand the change, we knew it was coming, but the timing is really bad at the moment.  The tests he needs and the suspicions I have are neurological and it will be at least 8 weeks more until I get to see the new one.  I'm trying to move that up but I've been unsuccessful thus far.  

My Dad is also having cancer removal surgery this week.  Don't tell him I put this on the blog or he will be pissed.  I'm pretty close to my dad, although he isn't the easiest man to be close to.  He is just an old, old, old school guy who is getting older school by the year.  He doesn't take it well when he is on the receiving end of treatment and doctors and such.  I generally try to buffer between him and the doctors so he doesn't get aggravated and they aren't tempted to OD him on morphine.  Despite the difficult personality, he loves his kids and grand kids and we love him right back.  Everything I learned about the importance of honesty and integrity I learned from him.  I respect him for that.  I just hope we have more time to appreciate each other, even though we are so different.

So that's the double-whammy.  And what happens to the caregiver who is already in a knockdown drag-out fight for their special person, is that the second whammy comes along as a part of normal life, and its just overwhelming.  Trust me...being a caregiver doesn't make you exempt from "normal" family doesn't make you exempt from money problems...and it doesn't make fate treat you any kinder.  We get all the normal crisis on top of the full-time caregiving crisis.  

Today it feels like a weight squarely across my shoulders.  It has been all I can do to remain on task and be productive.  But I remember the message I put on here time and again...I WILL GET THROUGH THIS.  There is always a light somewhere and if we just keep crawling through the weeds we eventually find it.  

Right now its just weeds....

Be well and God bless.   Tom

A Milestone Reached

Good morning.  The plan is to post an update a little later today on how Mr. Tyler is doing.  Before I do that, I wanted to let everyone know that the blog has reached another big round number of views!  Since this blog was launched about 3 years ago we have reached the lives of 60,000 readers.  I cannot express how wonderful it feels, especially now when we are in the midst of a struggle with Ty.

I'm sure Tyler would agree when I say I hope by presenting our story we have managed to help some of those 60,000 readers.  Though we will never truly know, it would be great to believe that we have changed at least one life for the better.  I want to believe that our words have made people laugh, cry, and most of all to think about things in a different light.

Those 60,000 views have come from all over the world, which shows that being a caregiver is a universal thing.  Unfortunately, Autism, Alzheimer, and every other form of mental illness knows no boundaries.  Mental illness doesn't care if you are rich or poor, black or white, young or old.  

To those of you reading in Russia, Brazil, Germany, Canada, South Korea, France, India, and every other part of the world, I thank you for receiving Tyler's message from so far away.  If you are a caregiver in that part of the world, I send my respect and my love.  For those who follow here in the United States, I thank every one of you for being a part of this journey.  

I want to leave this post with a simple thought.  I am so proud of Tyler today.  There are few people in this world who can touch the lives of so many.  He bring encouragement and joy to everyone around him, he spreads a message of love throughout the world, and he shares Bibles with his local church.  What a blessing he is.

Be well and God bless.    Tom